Autoimmune Disease and Me
Most recently I received a diagnosis of Birdshot Retinochoroidopathy (BSRC) - which is an uncommon, bilateral inflammatory disease affecting the choroid layer of the eye (between the outer sclaera and the inner retina). It belongs to the group of disorders known as the idiopathic multifunctional white dot syndromes. It was first really discovered in 1949 and variously called "candle wax spot retinochoroidopathy " and "rice grain retinochoroidopathy", which gives you an idea of what is seen on examining these patients. It only gained formal recognition as it is currently known in the early 1980s. Its cause is not entirely clear but it is thought to be related to an inherited immune dysfunction, as there is a strong association with HLA-A29 positivity (about 90% of patients)and to a lesser extent HLA-B12 positivity. There are progressive abnormalities which develop in the choroidal vessels resulting in leakages and eventually atrophic spots. There is an associated low-grade uveitis which can eventually lead to permanent loss of vision. (Source patient.info/doctor/birdshot-retinochoroidopathy)
I'm terrified of BSRC. There is so much that is unknown about this disease and the treatments are far from pleasant. I constantly think about the last statement in the definition. I hate to think of losing my vision and not seeing my family grow. All of the things that this disease can take away from me is frightening. Sharing this with family and friends has been difficult, because they don't understand the severity of what can happen or why I wouldn't want to just take medicine to make it better. I have been taking my go-to response on handling this...joking about it and pretending that I don't have it. Not an extremely effective way to handle it, BUT it works to hide the terror I feel about the whole thing.
But in case you're interested-this is how my journey has gone thus far:
June 16- presented with floaters( a ton of them) and flashing lights in my left peripheral vision
June 20-went to my eye doctor and they had me see their retina specialist, fearing I had damaged my retina somehow. They gave me a referral to a specialist-I still had no idea what was wrong with my eye
July 7-Finally saw the specialist. He did many tests with my vision, including florescence screening and blood work-prescribed 90mg of prednisone for one week
July 15-Confirmed my HLA-A29 screen was positive and I was formally diagnosed with BSRC. After the doctor had viewed the pictures from the florescence screen he suspected BSRC-the blood test was the final piece to the diagnosis. At this visit I was given steroid injections in both eyes. This was one of the most horrific experiences of my life and topped the most painful list. I'm fairly certain I left my eyes closed for 80% of the day-as time allowed. Self-Reiki was my BEST friend this day!
So here I am, almost six weeks after the injections, with no noticeable improvement in my vision. I now experience pain in my eyes some mornings. I wear my glasses much more than I used to. I was an avid contact lens wearer, now I have horrible pain and discomfort in my eyes the next day if I wear them. So it's just not worth it. The doctor has recommended immunosuppressive therapy along with steroidal treatments. The short time I was on the steroids my sleep was horrible and I'm fairly certain that I could have eaten my couch I was so hungry all the time. I have no interest in taking the immunosuppressive medications. I see first hand what they do to my father, he takes them for his advanced Rheumatoid Arthritis. I have young children and lets face it, little people are like little petri dishes of germs. Living in fear of catching a cold is not something I want to do. I just picture myself walking around with a mask on all the time, especially during the winter months in New England. I am dreading my follow up appointment at the end of this month.
I can't blame all of my recent "diet busting" behavior on this diagnosis, but it hasn't helped. I reverted to all of my comforting behaviors, which include eating whatever makes me happy. During this time on thyroid medication, I have been struggling with losing weight. Of course the doctor tells me that my thyroid is not to blame, but in my heart I know better. I have tried many "diets" and failed each time. I have learned during this time that if I cut down on processed food, breads and sugars I feel better. But we all know that carbs, sugar and plain old junk food are comforting when you're stressed. I am fortunate to know someone who is well versed on naturopathic treatments, who can help to guide me on making some more "natural" treatments, rather than taking these drugs that will effectively "suppress" my symptoms rather than treating them.
I recently read a book on an Autoimmune Diet, which is loosely based on Paleo. I have been doing my best recently to follow this and to begin being more conscious of what I out into my body when it comes to processed foods. I am self admittedly a carb and sugar whore...I love them and I would eat them to the point of making myself sick, if given the opportunity. However, now this lifestyle change seems more important than before. I wanted to eat better for the most vain reason of being thin. Now I want to do this for my health. My true health. Studies have shown cutting these foods out of your daily diet helps with the inflammation in your body that you may have never known was there. I have been fortunate to do a cleanse with Standard Process before this diagnosis to know what foods "trigger" inflammation in my body. This makes for short work on changing my lifestyle rather than having to go through another cleansing period and introducing foods back in, seeing if there is a reaction.
In closing, since I've been rambling on about all of this, my point is this. I have some major lifestyle changes to make. For a serious reason, my overall health without taking these severe medications. HOWEVER....writing that is SO much easier than doing it. Our society has made "junk food" so accessible and inexpensive that its so easy to just pick those items up and make them. I mean the convenience alone of grabbing a package of processed food to make for dinner in 15 minutes is far more appealing to a busy family than the fresh food and creating the meal. I am terribly guilty of that and my kids deserve better.
I'll be posting more on my journey with changing my lifestyle choices and more receipes that I am trying. I'm sure you'll see plently of salads on my Instagram and Facebook simply because I'm lazy and salads are an excellent choice for the lazy or I guess for people who like salad (I've never been one of those people). HAHA!
Thanks for listening.